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Uncovering Risk Factors, Disease Subgroups, and the Life-Long Health Impacts of Myalgic Encephalomyelitis
Safe People
Organisation name
University of Edinburgh
Applicant name(s)
Audrey Ryback
Funders/ Sponsors
University of Edinburgh Optimum Health Clinic Foundation
Safe Projects
Project ID
DL_2024_039
Lay summary
About one in two hundred people have myalgic encephalomyelitis (ME), sometimes referred to as chronic fatigue syndrome (CFS). ME is an understudied illness. How symptoms and treatments vary across the lifespan of people with ME is unknown. This disease is associated with very poor health-related quality of life. There is no cure or effective treatment of symptoms and no biomedical understanding of what causes ME. Our project is intended to shine a light on the lifelong experiences of thousands of people with ME in Scotland. We will use electronic health record data within DataLoch to understand factors that pre-dispose them to the illness and the impact the disease has on their life and long-term health. We hope to find different illness patterns to better understand how subgroups of ME patients experience the disease over their lifetime, and to look for markers from clinical tests that could identify people with ME.
Public benefit statement
ME is a chronic disease of unknown aetiology that affects an estimated 250,000 people in the UK and ~67m people worldwide. Despite the substantial impact of ME on quality-of-life, research into this disease has historically been underfunded. Disease mechanisms are not understood, and no treatments are known that are effective. Since there are no specialist ME services in Scotland, patient insight into the potential limitations of recorded clinical data is critical. We will consult with a patient and public involvement (PPI) panel to ensure the questions we are asking in our analyses are relevant to patients. The preliminary project proposal has already received input from two PPI members. More than half of the NHS boards in Scotland lack specific ME referral pathways, and the only NHS ME specialist nurse in Scotland recently passed away. Nearly 60% of Long Covid patients meet the ME diagnostic criteria. The NHS would benefit from more complete information on the diagnosis and treatment of people with ME, and this could also improve our understanding of Long Covid. Many patients experience stigma around their disease. Greater awareness of ME and its impact on people’s lives in Scotland would help reduce stigma and benefit the public.
Request category type
Public Health Research
Other approval committees
Latest approval date
21/10/2024
Safe Data
Dataset(s) name
Data sensitivity level
De-Personalised
Safe Setting
Access type
TRE